When Marianne Leone learned she was pregnant in 1987, she and her husband, actor Chris Cooper -- seen in such movie hits as The Bourne Identity, Seabiscuit, and American Beauty -- were living in a tiny sixth-floor walk-up near New York City's Times Square. Money was tight, but the couple was ecstatic. "I had a beautiful pregnancy," says Leone, who is best known for her role as Joanne Moltisanti, Christopher's mom, on HBO's The Sopranos. "I didn't worry about a thing."
But at 30 weeks, Leone went into labor and gave birth to a 3.5-pound boy, Jesse. After three days in the hospital, Jesse suffered a massive cerebral hemorrhage, and doctors said he'd likely die within a week. Jesse survived, but his parents realized something was wrong when, at 4 months, he couldn't hold his head up.
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When Jesse was almost 2, doctors diagnosed him with cerebral palsy (CP) and seizure disorder. In her new memoir, Knowing Jesse: A Mother's Story of Grief, Grace, and Everyday Bliss, Leone tells the story of her life with Jesse, who died at 17 from a seizure. Jesse couldn't walk or talk, but he wrote poetry, swam, and inspired those around him to expand their definition of "disabled."
According to United Cerebral Palsy, an estimated 764,000 Americans are living with CP, a term that covers a number of neurological disorders that permanently impair body movement and muscle control when the developing brain is damaged. There is no cure, but physical and occupational therapy can drastically improve quality of life.
These days, parents groups and therapy centers are just a mouse click away, but when Jesse was growing up, Leone felt utterly alone. "I wrote this book to celebrate my son's life," says Leone. She also hopes it will teach medical and educational professionals about the powerfully positive -- or negative -- role they can play in the lives of disabled children and their families.